Transcript for Daniel Leong

Kelly Bron Johnson (00:00):

Welcome to episode 14 of the intersections on the spectrum podcast. The intersections on the spectrum podcast is the brainchild of Doug Blecher and Kelly Bron Johnson created to discuss intersectional issues within the autistic community and give visibility to commonly marginalize, repressed, underrepresented, or erased identities and issues. We aim to introduce you to the people and stories you didn't know about, but needed to hear and help that by seeing yourself represented in the community, allows you to feel seen

Doug Blecher (00:31):

Today's guest is Dr. Daniel Leong. Daniel is currently serving the autistic community through the Autism Initiatives Malaysia, a collaboration between parents service providers, academians, self advocates, which focuses on supporting autistic adults. Daniel, thanks so much for joining us.

Daniel Leong (00:57):

Thanks for inviting me Doug and Kelly.

Doug Blecher (01:02):

I wanted to start out as we do with all of our guests and learn what are the identities that best describe you?

Daniel Leong (01:11):

I'm Daniel from Malaysia and yes, I'm autistic only knew that when I was thirty one and, uh, I actually started out not speaking, but I'm not. Is that relevant to the person who asked him? Sorry. Okay. I actually started out not speaking, but 40 years ago, nobody had heard of autism. So I went through life without the diagnosis until, until my mom started talking to people who had children who had autistic young adults and she started to realized, oh, so that's what it was. That's why you see, my mom had to quit their job to teach me to speak herself. So there was a lot of issues. There were, there were plenty of issues along the way, but I only, I only found out much later in life.

Kelly Bron Johnson (02:01):

Very cool. I got diagnosed at 32, so very similar and I, I didn't speak very early or very easily, so I actually wanted to speak a bit later.

Kelly Bron Johnson (02:12):

Um, but yeah, so very, very similar. So, so Daniel, you were the first person or you are the first person that we've interviewed who's a member of Mensa, the largest and oldest, IQ society in the world. What has that experience been like for you ?

Daniel Leong (02:30):

Honestly, There's only two. Uh, the requirements to enter Mensa is your top 2% highest IQ. So, okay, but I'm not the only one. I think I, if I recall correctly, I just barely scraped in. Whereas the cutoff point is I think 152 or something or 153, but a friend of mine, uh, he scored you know, they use this IQ tests that you have to get in and they got, and he scored the maximum possible. He's also autistic. So I'm not the only autistic member of Mensa.

Kelly Bron Johnson (03:16):

But you're the only one that we've interviewed.

Kelly Bron Johnson (03:17):

You're the only, only person that we've interviewed that ss part of Mensa.

Daniel Leong (03:22):

Well, I'm not as brilliant as my 180 IQ. I can't touch that on this honestly because of my involvement with the with him. Well, I knew I was, I was a member of Mensa before I was, uh, I was diagnosed, but because, but because of my current, uh, obligations to the autistic community, I'm not able to be so active with Mensa, although I checked them out now. And then, uh, to see if there's anyone under autism there who is looking for supports for parents, with children, looking for supports. I don't, my focus is really to help support the autism community mostly. But if you ask about what my experience, so if you ask me what my experience with them is, I've I have joined in a few activities of this when I was young.

Daniel Leong (04:11):

Uh, the different, the different mints are our societies and different, uh, have different levels of activity in different countries. But I can tell you that. I think that, uh, my parents did figure out that I was intelligent long before I was autistic and that helped too. And that help to make it. And that made it more difficult to detect autism. My mum didn't bother point. I only started talking when I was born, my mom even had the quit, the job to teach me herself. She was an English teacher, but she still wasn't worried because I made these wonderful, lego things. He said, no problem. He's intelligent, not knowing what ride she and I were informed along the way that so intelligence does that because I'm intelligent.

And when I started speaking, I could speak, well, I could speak very well. These are the things, help, these other things, make it more difficult to detect autism.

Daniel Leong (05:09):

Like you're so smart. How can you be autistic?

Kelly Bron Johnson (05:11):

I had, I had that same experience as well. So my sister's genius. So my sister qualified for Mensa, but chose not to join. I'm borderline genius. And my, my son is also borderline genius. So we're not quite the cut off for Mensa, but we're just about almost there, but, and that's it. I think that a lot of guys, my part of my late diagnosis is because I had that competence, surrey, compensatory skills or intelligence. So again, it's like, well, how can you be so smart and then make a mistake like this? How can you be so smart? And then, and it's really hard. So, um, it's, it's quite hard to get proper diagnosis. I think people don't quite understand the nuances of, of autism.

Daniel Leong (05:50):

And so, yeah, it's very similar to now with cases we even had this week, really? What, how much more difficult is it without these clear indications? Like the speech delay? Exactly. That that's why we only ended up being diagnosed in the 30's.

Doug Blecher (06:04):

Daniel here In north America, um, diagnosis of adults is not, um, outstanding. Let's just put it that way. What what's what's the like diagnosis process like in your country?

Daniel Leong (06:21):

Oh my goodness. Don't get me started. This is a worldwide problem. This is a, this isn't just, if, look, if it's no good, if it's, if there's limited avenue to get a diagnosis for adults, folks who have low support needs in America, you can be sure it's much more difficult. It's much more difficult in Malaysia. Yeah, it absolutely is. And the first place, um, my goodness, uh, most people don't entrain with the tools, even people who should be, uh, critical pediatricians, they are better even detecting children and autism.

They are not better at that nowadays, but even then, but even they are a bit better with children then that's, but even then, but even that is quite limited over here. So I've got this rather short list of, I do maintain this list of diagnosis. So when parents or people are looking for, uh, hey, I think I have autism. I make them do the screening test first. And they, and if they score well on screening tests, they say, oh, okay, now this screen, now you, there is grounds for you. With this result of the screening test. There is grounds for you to seek a formal diagnosis, but good luck and give them the possible people.

Doug Blecher (07:48):

With, with intersections On the spectrum, where we're interested, very interested to learn about kind of the intersection of autism and all the different cultures throughout the world. So living in Malaysia, what would you say are the current realities for autistic adults and children?

Daniel Leong (08:09):

I think some of this in the first place, there is the services are very scarce. So this is very scarce we've got some, uh, and your organizations, which are helping out, uh, such as autistic society or Malaysia or, Malaysia care to name a few. But I think this is true worldwide as well. The lion share of the end of the intervention focus is on young children, as well as young children with moderate to higher support. So the children with low support needs, which would have been called Asperger's previously will completely the doctors, our doctors will tell the parents, don't worry, I'll go and they'll grow out of it. And they never do. That's one thing, there's also the some cultural issues. Like when I used to work back at the early intervention center, we are, we tend to be the last place the parents will bring their children to the parents will first bring their children's to say the temple because, oh, we think he's got monkey spirit possession, or, uh, or some bring it to the local.

Daniel Leong (09:33):

Witch doctor? No, that's not a healer, a spiritual healer or, uh, yeah. Um, you know, this is the Malaysia version. Uh, they will use the it's kind of olds traditions, which have got some Quran Islamic verses thrown in as well, as well as you've got people who, and you have some traditional, some country cultural beliefs, which are passed down, like, I described to me things like, so we've got, so these things complicated, these things complicate get the parents, helping the parents find the help they need as well. And there is a growing anti-vaccine movement. I'm sorry. I'm sorry to report in Malaysia as well, which has caused, uh, some, uh, we just call some deaths because people are not getting vaccinated.

Kelly Bron Johnson (10:43):

Wow. I didn't know that. Especially because for me as a traveler, I need to have those vaccines usually to travel. So it's it's yeah. That's wild. Okay. So in, in 2019, you participated in the life after death, autism forum, which was the first autistic led autism event in Singapore, the form was created support to support autistics, to continue to thrive long after their caregivers had passed on. What suggestions do you have for autistics and preparing for that time in their lives?

Daniel Leong (11:14):

I'd recommend your find support systems to help you. It can be peers, it can be a peer group. It can be mentors for, for example, you need to find people who you can trust to support you because we have different strengths, as well as our weaknesses. There are some areas which we needed some areas, which are strong in, in some areas, which we need to accept, that we might need some support to find those supports, to help you to, uh, to, to help you to, to live independent as independently as possible.

Daniel Leong (11:55):

Well, that's easier said than done in Malaysia actually.

Kelly Bron Johnson (12:01):

I liked the idea of that community, helping each other, right. That's sharing skills. If somebody has a strength in one thing the other one can share from that.

Daniel Leong (12:08):

I think it's important to recognize both and try to build, try to build on your strengths and work around your weaknesses. I, uh, if you can overcome your weaknesses, that's great, but some of it, but realistically, some of us, we have some things we are good at and some things we are not so good and it's okay to lean on some, to lean on supports of those around or the things we are not so good at that.

Not so good that it's small idea. This may come into play when for those of us, uh, for those, for those of us who are looking for employment jobs that can come with job coaching, unfortunately in my country is very scarce.

Daniel Leong (12:45):

Some of us might need realistic. Some not least some of us might need, uh, to live independently. We might need a specific living assisted living. This is some things you should discuss with, uh, with your with your parents, with the people who are currently with you, and you should take it. You should take an interest in this, definitely take an interest in this as well.

Kelly Bron Johnson (13:05):

Following up on that, is there other are institutions common, so are artistic people commonly institutionalized in Malaysia? Or is there more of a community living arrangement?

Daniel Leong (13:15):

Uh, Hmm. That's a good question. Okay. In Malaysia, we have, we do have institutions for people with very high support needs that they essentially act as dumplings in the dumping grounds but they are run by very loving people who are very committed and who are very committed and too, but sometimes, but there are, they tend to be to be maybe catering for the most, for the people who have the highest support needs.

Daniel Leong (13:54):

So who will really understand the families are overwhelmed and the families themselves are all of my own. But for as for the, when you move up the scale, it's a bit different when you have, when you get, because it's so it's expensive, that's the thing. So, so most families tried to support their children there with themselves, or with with, to their relatives, or they are hoping that they're stuck there or the, the, the brothers and sisters will do it. And the brothers and sisters run away saying, no, no, no, I'm not going to do it so that when you move on to folks with, uh, low support needs, the support is almost non-existent.

Doug Blecher (14:42):

Daniel. Do you have a sense of what the living conditions are like in those institutions? Because you know, here in north, um, while I think things have gotten better, you know, over the, over the years and over the decades, there've been some really terrible situations within these institutions.

Daniel Leong (15:04):

I've seen pictures of what happens in America, in the 1950s. Okay. Sorry, but I'm sorry to report. I would first say that it's variable. There's a, the, the, it's not always the same, but there has been instances where it came up in the papers. You see, uh, horses, 10 years ago, 20 years ago, they were put in cages and, you know. Locked down to the, to their beds and this, and they beat them by spraying them down with the hose. To understand these are the people hired in some of these government. Uh, in some of these facilities, they have very little training and they're just there to do their job essentially. You know, I've been hired to do this job. I have no idea how to do it. I just do it the best I can. And, oh my God, how do I do this?

Daniel Leong (16:07):

I have no control over this situation. I'm going to put, all I can do is I can put them in cages and change them up because that's all, that's all we got the resources that's, uh, that's all we got the resources for. We don't know what else to do. I hope that after that case came on in the papers, everybody, all the rest don't do that anymore.

Kelly Bron Johnson (16:29):

But you know, that still happens here. That happens. Although I would say that. So I'm in Canada and I'm in the back specifically because each province does things differently. Uh, but I think we have more group homes, more, uh, is more common about 10 or 15 years ago. I don't quite remember. Now there was a whole movement to basically empty out our institutions. And so the only people that were left were really the most, um, severely or dangerous people.

Kelly Bron Johnson (16:55):

And it sent a whole bunch of disabled people into the streets, basically that became homeless. But if you're under 18, you end up usually in some sort of group home situation. So it's not quite a foster home, but you're living in a group with like five, six other, um, children with different needs. And there's people that will, will take care of you. But I, I don't know if there's an ideal, you know, I would rather see some sort of community living. Again, we were talking about sharing skills or being in a shared environment. So you could have your private apartment, but if you need help with food, somebody will come and feed you or help your bathe or something like that. Um, there has to be a way to do it with dignity and respect, but yeah, we're, we're still quite far from that.

Daniel Leong (17:42):

There are a few programs and not here, but the report, the, I don't know about Canada, but, uh, I'm aware of a couple of programs such as and whatnot, but honestly, they haven't been looking at this it's so, uh, so intently because most of my peer group, my community, uh, in my, in my current peer group have low support needs and they tend to either live. And it's very common to live in a culture. It's very common to live with your family until you get married. And most of us don't marry. So we just keep on staying with our parents and that's considered acceptable because, you know, we didn't, we don't have children. We don't have a wife, a spouse or a spouse. yet.

Doug Blecher (18:34):

Daniel, you mentioned earlier about peer support groups and, uh, currently you're part of Autism Initiatives Malaysia, which is a peer support group for our autistics. What have you seen, um, as part of the benefits of this peer support?

Daniel Leong (18:51):

We were quite a bit more active before the pandemic. We used to meet, we used to have in-person meetups back then the pandemic hit this pretty hard and we're pretty new for us, but were getting along. Uh, as to the benefits aside, one is the emotional support we are learning then to, to be, to be friends with each other and to emotionally support with each other to form friendships. There are some of the members who have, I have, sorry to say, never had friends in their lives. That's kind of common and they've met some, not all, but some of them have managed to find their own little cliick and meet each other through the group. And after that they can. And from there, they, and from there, they have different, they can be found, they can do activity.

Daniel Leong (19:50):

They contact each other to do activities together, and I'm quite happy and I'm always happy for. And I'm quite happy for that too. There's also the networking aspect. So looking for, because some of those of us who have access to exit, uh, looking for services, we can help each other find some that we can help each other find services that we need. It's mostly me doing it though. This, so there's some sharing of experiences to share sharing of knowledge, because we do have, although we are focused now in used to be at AIM has moved up to is now focusing on the peer support platform. It used to be something, AIM used to the organization, the small team I'm working with you both from a different platform and is now focusing on the peer support group, which is called AIM High.

Daniel Leong (20:41):

We had, that's all we had. That's all we had. That's all we had the manpower for because splitting the organization, we had such a new team and we have hardly any manpower. So we do run webinars sometimes as well as we, and recently I've recently, I'd been in clamouring and quickly finding people that talk to my members about online safety and sexual harassment, because that has become an issue. That's an issue everywhere, but it's become an issue now until our members know how to protect themselves since they are vulnerable population. And some of them also, unfortunately they also need some guidance on not to become harassers themselves. 

Kelly Bron Johnson (21:35):

That's, that's amazing work you're doing, Daniel. Um, I can share with you if you'd like asked her because I helped treat, uh, uh, a cyber security program for autistic people it's free and available on the web. So I can send that to you after, um, if you want to share that with your members.

Daniel Leong (21:40):

Well, thanks. I appreciate the offer, Kelly.

Kelly Bron Johnson (21:42):

For sure. And it, you know, it came out of this need where we realized that there were, like you said, a vulnerable population, sometimes , socially naive. And you know, I've been told stories and, and, and heard from people who said that they were asked to chat with. So, you know, a pretty woman. And then she kind of went into the room with her and then she tried to get him, you know, to give money and things like that. And he felt very, you know, he was very embarrassed and very, very scared. You know, he thought maybe she would come and find him and things like that, that happened all the time for completely innocent reasons and just not knowing. And so talking about it, getting the information out, trying to keep people safe.

Kelly Bron Johnson (22:23):

It's really, it's really important to me. I can share that with all the listeners too. Cause it's free. Like I said, it's free. It's available on the web. It's in English, it's in French. It's an American sign language we need who need the information out there. So all this work you're doing Daniel. So what kind of advice could you give to anybody who's interested in starting their own peer support support group?

Daniel Leong (22:44):

Oh my goodness. Don't try and do it alone for heaven's sakes. Don't drive into it alone. Oh my word because you see, because the support, because the peer group tried to have a firstly, firstly, this way a lot of work because you're going to, you're going to be trying to support people who have a lot of needs

and their needs are not being met and you yourself cannot meet all their needs because let's be honest.

Daniel Leong (23:21):

I don't, I think this is the case. I don't think this is just a case in Malaysia, but most of the members of our peer group, they have a lot of needs, which are not being met. It's just part of the business. It's just part of our reality right now. This is it's this, this, this, and this on there. So because of it. So, so because there's so little of our needs being met a lot of your members still have a lot of issues with sharing, which, I mean like your peers, um, sometimes there'll be disagreements or misunderstandings as with any peer group there's the need to moderate and there's a need to learn how to, how to,I was going to say, put out fires. I'm trying to, uh, how do I put this deescalate? Deescalate, uh, disagreements. There's a, there's a need to learn.

Daniel Leong (24:21):

There's quite a few skills involved learning how to deescalate situations. Some of that, some of the members will, may have limited social stamina. So they may need to get, make friends. They need activity rather than just conversation. That's one tactic, which is hell of a difficult during the pandemic with active after the pandemic. So those could be activities like basketball, exercise, something like that.

Once again, I just read it through it. Don't try to do it with the also all by yourself, especially if you're like me and you have a low social stamina because I tried to get the, tried to run the game of script all for the gang after about one after one, after 45 minutes. And it's, it's already, I, I think to get loose, do find, try different networking is important to find the teams that find the team of people that help you to do things for look, I even, I've got the team of people, uh, because I was coping by, uh, someone else never mind about that.

Daniel Leong (25:34):

Even I got a team of people who are helping me out this team off of some programs, professionals who are helping out pro bono. And of course there's limits to how much, how much to volunteer, what they can do for you. But even then it's even then it's a hell of a lot, can be a hell of a lot of work, unless you've got a lot, for example, there's another, there's another peer group, uh, which is church-based. And they've got a lot of, and they have access to a lot of church volunteers. So if you are connected to another community like the church community, for example, that can be an avenue to find it, to find the volunteers at the pure manpower you need, they help you run the activities and to help them things, it didn't make things work. I mean, it is myself.

Daniel Leong (26:22):

So that doesn't work for me. So I have to, so I have to rely on other side, the right on another team.

Kelly Bron Johnson (26:29):

Yeah. I found that too. So I moderate a large group, puts an online group on Facebook. It's like a thousand of us across Canada. And, and that is always, um, when it comes to like physically getting people up to things, I find autistic people, they call it, you know, we have the expression. It's like herding cats. Cats are already in 500 different directions and trying to herd them and get them in one place or, oh, come. We are trying to, we're trying to have smaller focus groups because some of us, we have direct better with fewer people. So we've got the women's team. We're not that big a group in the first place, but, uh, we've got the women's support group with the women's support group is going quite well.

Daniel Leong (27:12):

There's then at the end that the group of our members who have formed their own inner circle as well as now as trying to start up the men's support group men's support group, it's something like how the church, how the church sometimes run still a more focused, uh, personal touch that's that's I think GRASP from America has used the, used to use some of the same things that formula as well. Um, and I find that you said too, when you mentioned that kind of coming at it from a trauma informed perspective, understanding that we have a lot of needs that aren't being met in a society that should be met, but they're not being met. And, you know, realizing everybody has their baggage and their trauma from our own backgrounds. And especially if it's a peer group that she's had bad experiences with friendships before, it can be very difficult to trust and to, to know what to do. Cause you're scared you're going to do something wrong and there's so many layers to it. I understand. I understand what you're saying. So the job with that work it's important things, uh, we're trying our best, the pandemic really hit us hard, honestly.

Doug Blecher (28:18):

So here on, um, intersections on the spectrum, we try to share stories that may not often be as commonly heard on podcasts. So what, what do you think would be, uh, important stories for me and Kelly to highlight as we move forward with intersections on the spectrum?

Daniel Leong (28:37):

Oh gosh. In the country like Malaysia, we're active, actually aware. Okay. Maybe not in the most rural areas, but there's actually a fair, decent amount of awareness of what autism it's being. Um, people are starting to find out what it is, but there is, but we're at this in countries like mine where the stage where people have heard of autism, but they don't have the standard and they've accepted and they definitely not prepared to accept that this, no, there's almost no inclusive schooling in Malaysia, for instance. So, uh, in countries like mine and we are moving, uh, where the services available to us all scarce, the people it's community-based community-based support systems are. So I think the spring up, perhaps sometimes it's from the parents, some of them sometimes, and in our case, it's autistic led itself. I, uh, I think there is a need to, uh, to build up leaders like Australia has its ICAN program, which often trains mentorship to train leaders in the autistic community.

Daniel Leong (30:00):

I wish we were at that stage where we can actually train up our leaders. The there's a lot of work to be done, uh, uh, uh, in countries like mine with how scarce resources and services are this there's just so many needs not being met. And we are doing our best. We're doing our best little bit here and there to try and to try and meet those needs and try and bring to them, meet those needs of those who meet those needs through, through, through our own community. Uh, I'm not sure if that's what you're looking for, Doug. Sorry.

Kelly Bron Johnson (30:43):

No, it's great. You actually got your name from Dawn-Joy. So thanks for putting us in contact as well because, uh, you know, Doug and I are in north America and hearing from the other side of the world and more stories like that is so important to us just to give people perspective. Like you, you know, even started out with saying, you know, this is a worldwide, a worldwide issue for sure. Um, but understanding different people's perspectives and, and what kind of differences that they're making in different parts of the world. Um, I think those kinds of stories are really valuable to us.

Doug Blecher (31:16):

And I think, you know what you said, Daniel, like all across the world to kind of, to Kelly's point, we need a lot more education and acceptance.

Daniel Leong (31:27):

Yes, absolutely. Well, I've been to the us when the area, well, I'm not sure what they should say, seeing how, when you're in the head. And, uh, but what I wanted to say is that some, and for example, we are pushing, one of the things we're trying to push for is supporting the universities is because it's because so universities are starting to realize, oh, there's people like there's people school, or like Daniel, who actually who I had to, oh gosh, I think that there's a, there's this whole, there's this whole, there's this actual act in Malaysia, this, uh, education act in Malaysia from 1996, where children only, uh, get an education if they are educational. If they are not applicable, instead of coming under the education ministry, they're instead shifted to the welfare department and educable usually translate as toilet trained and able to enable to self-feed. So if they are not toilet trained, as soon as they hit seven years old, you don't even get to go to a special school because as the minister, as the person from the ministry tells us, because our teachers are not nurses, we kind of work your butt off for you. That's what they told us. These are the types of things.

Daniel Leong (33:05):

Where we've got that world lawyers group. And well, when we were talking to this, this, and we're trying to change the laws and things like that, we're still at that stage. You guys have, you guys have gone past that stage and you've got your IDEA act and things like that. Yeah, we are. No, we're nowhere near that yet.

Kelly Bron Johnson (33:21):

Wow. I'm also going to put you in touch with one of our other past guests, uh, Dr. TC, um, because her research is all about, uh, academia and autistic people, you know, having an, uh, an accessible and accommodated university experience. So if you don't mind, I'll put you in touch with her as well.

Daniel Leong (33:41):

That's fine. Thank you.

Kelly Bron Johnson (33:43):

This is the networking. This is how we do it.

Doug Blecher (33:47):

The networking from the peer group just expands. Well, Daniel, thanks so much for, uh, joining us today. Um, really great conversation.

Daniel Leong (33:57):

I'm sorry. I think come on earlier. I think that the task of get to know you, uh, you and Kelly better, Doug.

Doug Blecher (34:03):

Well, we'll, we'll definitely give you that chance.